Profile in Hope: Amanda’s Story: Life with Celiac and Hashimoto’s Disease

The War Within: Amanda’s Life with Celiac and Hashimoto’s

Roughly eight years ago, Amanda knew something wasn’t right with her body.

Her condition ran deeper than simply not feeling well or general malaise. Amanda was experiencing unexplained hair loss, vertigo, dry, almost lizard-like skin, extreme fatigue, abnormal bloating and debilitating chronic migraines. Taken separately, many may have classified her symptoms as mere painful annoyances, but as they ravaged her body simultaneously, Amanda knew intuitively that they were anything but benign.

She recalls a cruise vacation with friends where her illness was evidenced in photos. Comparison of photos snapped in the morning to those taken in the afternoon same-day, Amanda’s size increased noticeably. Her face and figure were unusually puffy and bloated. For the first time, she was confronted with the optics of the war within her body. Perplexed and shaken, she worked for months to connect the dots.

After numerous invasive tests and doctor visits, Amanda’s general practitioner diagnosed her with Hashimoto’s disease, also known as chronic lymphocytic thyroiditis. Amanda’s immune system was attacking her thyroid, a small gland at the base of her neck, resulting in an under-active thyroid gland (hypothyroidism). The thyroid gland, part of the endocrine system, is a vitally important hormonal gland that plays an essential role in metabolism, growth, maturation and emotional well-being.

As can be common with chronic illness diagnoses, Amanda’s physician neglected to explain the disease and its consequences completely. Left to navigate her new illness virtually solo prior to her appointment with an endocrinologist, she turned to the internet for information. Greeted with discouragement, she held little hope for a leading a “normal” life.

A few weeks later, however, Amanda left her endocrinologist appointment reasonably reassured. The specialist invested time, listened to her story, and understood how to participate in a mutual dialogue about thyroid issues, helping Amanda envision a better future. Her journey wouldn’t be easy or simple, and she’d be required to maintain regular doctor visits every three to six months to monitor her thyroid and adjust medication levels, but she now had hope. Amanda embarked on a new, lifelong journey unaware that a separate, underlying autoimmune disease would jockey for control over her body.

For three years post-Hashimoto’s diagnosis, Amanda lived unknowingly with Celiac disease, a genetic autoimmune disorder triggered by consuming gluten. Celiac goes far beyond simple intolerance to gluten. When a person with Celiac eats gluten, the protein interferes with the absorption of nutrients from food by damaging a part of the small intestine called villi, making it nearly impossible for the body to absorb nutrients into the bloodstream. Celiac is a serious disease and can lead to malnourishment in addition to a host of other issues, including some cancers, osteoporosis, infertility and the onset of other autoimmune diseases. Not surprisingly, patients diagnosed with thyroid issues are more likely to be diagnosed with Celiac disease, and vice versa.

Prior to her Celiac diagnosis, Amanda remembers becoming averse to crowd favorites like sandwiches and pizza because of the resulting agonizing sickness. A single beer would render her bedridden, and she soon learned her chronic migraines were food-induced.

Amanda reached her breaking point when she became profoundly ill after attending a birthday party with her mom. The culprit? Rich, decadent chocolate cake. Shortly thereafter, she was formally diagnosed with Celiac disease.

A few days post-diagnosis (2009), Amanda braved Costco in search of gluten-free snacks for work. After an extensive search, she recalls collapsing mid-aisle, sobbing uncontrollably. In tens of thousands of square feet, she couldn’t find anything to eat that wouldn’t begin a war within her body. Alone and low on hope, she pushed forward.

Amanda endured a similar experience at a local grocer and finally turned to the internet for help. The result was an unlikely, desperately-needed victory. She mustered the courage to join a Celiac meet-up group in her area. Suddenly, she was surrounded by others facing identical challenges; she quickly became her own best advocate and a student of her diseases.

The meet-up arranged a tour of a nearby grocery store that offered an insider’s look in gluten-free shopping. The group dined at various restaurants monthly, learning together how to eat out with Celiac. They discovered new foods, talked about what worked and didn’t work and developed strategies in coping with their disease.

Amanda learned that eating out was incredibly tricky, particularly due to gluten cross-contamination. Because most restaurants kitchens use the same pots, pans and serving trays to prepare dishes with gluten and gluten-free foods, those with Celiac are likely to be exposed to gluten unknowingly. Even the slightest trace of gluten instigates a significant (and scary) reaction for someone battling Celiac.

Learning to leverage the odds and potential threats, Amanda became a strong advocate for herself. She felt her courage bloom and began to overcome the chronic illnesses she once feared. As Amanda flourished in spite of her coupled diseases, so did her romance. She was soon planning a beautiful, gluten-free southern wedding.

Her Celiac meet-up group introduced her to a phenomenal gluten-free bakery, a gluten-free gelato bar company and a caterer who proactively scrubbed and sanitized his entire commercial kitchen to prevent cross-contamination of dishes for her big day. She was relieved, delighted and triumphant in her wedding planning. Amanda was hitting her stride and learning to thrive again.

Part of hitting her stride meant dissecting her home. From a product perspective, Amanda started from square one, literally. She pitched all kitchen plastics and wood items, including cutting boards, containers, serving bowls, trays and mixing bowls (plastics and wood hold traces of ingredients, including gluten-containing foods). She began using gluten-free make-up, hair products and household cleaners. She sorrowfully ixnayed one of her loves, chardonnay, after discovering many wine barrels are sealed with white flour.

Flash-forward to today: Amanda and her husband have a beautiful two-year-old daughter and a newborn son. Their lives remain completely gluten-free. Amanda’s thyroid was removed after the birth of their first child due to its substantial growth during her pregnancy. In 2014, her thyroid levels finally leveled with the help of medication and her constant vigilance. Excited about the passage of new FDA food labeling laws, she’s confident that truly gluten-free products will be easier to identify and trust. And that’s a big win in the fight to spread awareness.

Amanda’s positivity and inner joy sparkle. This woman is unstoppable. She refuses to be defined or dictated by circumstances or odds. She’s had to change her life, but she embraces the fact that the journey has made her stronger and more confident, both as a patient and a person.

Always looking to help others, Amanda asked me to share some of her favorite tips and tricks for those facing Hashimoto’s or Celiac either directly or indirectly, and I’m honored to be the conduit.

Amanda’s DOs:

Take your physician up on a trip to visit with a nutritionist. This helps to open your eyes to a new and fresh perspective on gluten-free living.

Do your own research, find what works for you. Understand that there’s a lot more to living well with your disease than what doctors tell you. Be your own best health advocate; be an informed patient.

Share what you’re going through with people you trust. If your family or friends have questions about your disease, encourage them to read about it and share your journey with them. Work to educate others proactively and positively.

If you decide to be private about your disease, implement strategies to brace yourself in dealing with other people who are uneducated about your disease. People are apt say hurtful things about subjects they don’t understand.

Buy lots of fresh food.

Know that you don’t have to sacrifice your sweet tooth. Retailers like William Sonoma carry a white flour substitute called Cup 4 Cup (cup4cup.com). The end result yields a gluten-free version of your favorite dessert.

Jot down a laundry list of what you can eat. This is handy in preparing for visits with friends and family (those who care will ask about what you’re able to eat). You may also want to start a list of things you can’t eat (your food journey may be slightly different from another Hashimoto or Celiac patient)

Request your spouse, partner or significant other to eat gluten-free with you (even at restaurants – it’s a terrible feeling to spy your loved one with a giant cheeseburger and plate of fries). There’s nothing like moral support.

Join a Celiac meet-up or support group in your area; leverage your learning curve.

Invest in Elisabeth Hasselbeck’s book “The G Free Diet.”

Understand that some people simply won’t understand what you’re going through, no matter what you do. That’s their problem, not yours.

Amanda’s DON’Ts

Don’t be afraid to tell people about your struggles, especially your family and loved ones.

Don’t be afraid of trial and error. Find out what works for YOU.

Don’t think you have to sacrifice taste just because you’re living gluten-free.

Don’t be afraid to ask someone you trust for advice.

Don’t be afraid to ask for help.

Don’t get discouraged.

Don’t be afraid to show your emotions in public.

Our journeys may be different, but those with chronic and autoimmune diseases often share experiences. Please know that you are never alone. Where there is a will, there is a way, and you will overcome the challenges you face. You’ll learn to navigate and thrive in this new life, just as Amanda has.

Amanda and I on the University of Alabama Campus, Fall 2013

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